Hello - My name's Martin. I'm new!!

[Martin E]

Hi! - My name's Martin. My mum was finally diagnosed with alzheimers about 18 months ago. For at least a year leading up to this, however, it was clear to me that something was wrong. There was only myself around to try and cope with the situation, and I found it very, very difficult to get the help for her that she needed.

I'd never really thought about it before, but I suppose I thought (rather naively) that in these kinds of very serious situations you could just ask for help, and a substantial package of care and assistance would immeadiately swing into place. Yes, hilarious, I know...

I was working during the day, and eventually ended up staying at mum's pretty much full time in the evenings and weekends. Her moods fluctuated wildly, from giddy excitement to tearful anxiety, and grief over my father who had died a couple of years previously. Much of the time as well it seemed that her interest in life was slipping away. All the things that had been part of her normal routine - shopping, cooking, housework, reading, watching tv - fell by the wayside. I had difficulty persuading her to bath, wash, or change her clothes. It was horrible - and to be honest, frightening - to witness.

Naturally I took her to see her G.P on more than one occasion. The only thing I can really say about this is that he simply didn't seem all that interested. His verdict - 'slightly depressed, finding it difficult to adjust to the death of my father.'

So on we went. Within another 3 or 4 months mum was telling me, when I came home from work, that her parents (dead for the last 30 years) had been around to see her. I found that when a loved one finally says something to you that you know proves that they are losing, or have completely lost their grip, it's horrible.

Back we went to the G.P Yes, he finally said, your mother appears to be suffering from some form of dementia.

I made lots of phonecalls trying to find out what kind of help and assistance was available for an elderly, vulnerable lady suffering from a serious degenerative disease. The answer? Not a lot, really. Someone could pop round and make her a cup of tea and a sandwich a couple of times a day, and just generally check she was more or less ok. Better than nothing I admit, but the equivalent, by this stage, of putting a sticking plaster on a gaping wound.

On we staggered. Another couple of months and we were at the stage where she was wandering down the road in her dressing gown, and locking herself out the house at night. I couldn't turn my back on her for a second. There was a serious accident just waiting to happen. Eventually I took the horrible decision that she needed to go into a home for the elderly and mentally infirm. I still feel guilty about it, and will do until the day I die. Sometimes I feel I should have just sold my house, given up work, and just looked after her full time. Partly is was a kind of squeamishness at the thought of giving her the kind of intimate care I knew she was going to need.

Anyway she's been in the EMI home for about 18 months now. I visit her regularly. Sadly, recently I've been getting less and less glimpses of my old mum.

I hate this disease. It's unbelievably cruel. I think that the fact it tends to afflict older people means it doesn't get the public attention it deserves.

Reading back through what I've written I realise that I've really just had a bit of a rant, and there's not a lot anyone could probably say in response, but I feel better for saying it!!!

Regards
Martin

 

[Áine]

Hi Martin. Welcome to TP. Quite a lot of your story sounds very like the nightmare I had with my dad. Like you said, I knew for quite a long time that things weren't OK with dad, but I couldn't get anyone to take any notice. "He's an old man, you can't expect him to be like he was 30 years ago." Because dad's abilities fluctuated a lot, I don't think I considered dementia, and neither did anyone else. And (sod's law) he was always on an up when I got the GP or anyone else to see him. Like with your mum, dad went into care and I felt guilty, particularly when he was unhappy. I was also afraid of the intimate care part of it, and bad as I felt about it, I knew that I just couldn't have the patience that some other people can have in caring for someone at home. At least it meant that the times I spent with him were times where I could focus on doing something 'fun' with him rather than the earlier days of being fraught about whether he'd eaten or washed and whether he was going to go wandering the minute I left. I guess we can only do what we can do.

 

[Michael E]

Martin hi,

Your right it's a real bitch this AD stuff...

What is so odd, is that we all of us seem to have a guilt monkey on our back, when in reality we mainly just do the best we can.

There is no rule that says we have to give up all of our lives to look after anyone. Our lives are as valuable and important as the person we are looking after!

Such a difficult balance - the moral judgements we are asked to make need a row of Solomons and dozens of babies to cut in half and even then... It becomes harder the 'out of it' they get.. I find myself thinking it's almost all normal and that I do not work hard enough at it...

My present dilemma is that the Neurologist felt that Tripadil - a drug that calms you down - stops the worrying - angst - was too powerful for Monique and was introducing 'Parkinsons' type shaking. He wanted to take her off that and put her on a drug which is apparently more user friendly. The system here in France is that he writes to the GP and the GP gives you the prescription and instructions..
So my friendly GP told me to over the period of a month to take Monique off the Tripadil onto the new drug -BUT it was up to me to decide if it was all going OK!!

She has become much brighter and more aware of whats going on around her at the price of a huge amount of angst and insecurity - to the point today, an hour ago, when I bunged her half a tripidal as I could not stand the sadness and anxiety any more!
She now seems quieter and less worried and less distressed.. We will visit the GP again in a week - and he will probably do what I advise!!

MORAL DILEMMA: Do you go for the somewhat zombie like, dull but not anxious version or the Brighter Aware more human but deeply troubled and distressed version?

Answers and or advice on a postcard as I am damned if I know what to say to the GP... Also concerned that my decision may be influenced - is influenced by not wanting to put all the effort into 'doing the calming down' acting all the time.. Selfish - or a guilt monkey on my back? Who knows

Martin sorry, that above is known is some forums as 'thread drift'... just agreeing that its bloody hard to know right from wrong sometimes - They don't have ASBO's here in France!!!
good luck with it

Michael

 

[BeckyJan]

'I still feel guilty about it, and will do until the day I die. Sometimes I feel I should have just sold my house, given up work, and just looked after her full time. Partly is was a kind of squeamishness at the thought of giving her the kind of intimate care I knew she was going to need.'

My main comment is you do not have to feel guilty (although like everyone else you will). You seem to have done an excellent job in difficult circumstances and it just would not have been right for you to give up home, work etc.

It is a horrific disease - I feel it is worse because we (carers) just cannot anticipate what comes next. Martin, I think you will find TP very very helpful as there are so many different views and experiences.

Best wishes Beckyjan

 

[Grannie G]

Hi Martin, How I related to your post as I`m sure did many others on TP. Don`t let the guilt take over your life. You have tried to do what`s best for both of you.
If you had given up work to care for your mother, you would only have prolonged the inevitable.

Michael, I would say every time, in regard to your Moral Dilemma, the best option is to reduce anxiety and distress. That`s what I`d chose for myself and that`s why I`d chose it for whoever I cared for.

 

[Amy]

Hiya Michael,
We had to go for the quieter version at one stage - if not dad would not have been able to cope. As you yourself said, your quality of life matters as well, and if Monique is unhappy and anxious, what is the point?
On a much lower level, I know that I preferred the dullness caused by anti-depressants, to the anxiety of being highly stressed.
I don't know what the right answer is - there isn't one- you know the situation better than anyone else.
Love Helen

 

[Lynne]

Hi Martin,
thanks for posting - just as it may have helped you to get the whole sad story down in writing for us, so it has probably helped someone facing a similar situation to read it, and realise they are not 'alone' in what they have to decide. It's such an invisible battle, this, that until I found Talking Point I had no idea what went on and what help there ISN'T out there. Unfortunately AD isn't a 'fashionable' cause like cuddly puppies or desperately needy children with appealing faces.

We all do the best we can, and that's not always keeping the Alz sufferer in their own home, in a potentially hazardous state.
We all have different circumstances and responsibilities in our own lives - spouses, partners, kids, grandkids, jobs, mortgages, debts - you can't just drop everyone & everything else & try to find that magic wand when there isn't one.

 

[mel]

Hi Martin
Welcome to Tp.....it does you the world of good to know that you've found a place where people really understand what you're going through.....you'll find it a lifeline!!
i think we all feel guilty ......I gave up my part time job in March and mum moved in with us.....but I still feel guilty that I'm not doing enough for her!!!! so really whichever road you choose you can't win!!

my sister in law placed her mother in an EMI home 6 years ago and as she admits it was the worst time of her life and she still feels guilty and not a day goes by when she doesn't worry about her.......in spite of the fact that her mother is getting the best possible care.......

Michael......I have the same dilemma as you....I'm taking mum to the GP tomorrow(as well as getting some more happy pills for me ) .When mum was in respite she was prescribed haliperodol to calm her down.....which they do but they also make her very dopey and drugged......but often still anxious and hallucinatory(sp?)(we've had god knows how many people coming in and out of the house tonight ).....so I'm looking for an alternative......

 

[Margarita]

That is so right if only I new then what I know now( that old saying )

Grannie G I would not of felt Don`t let the guilt take over your life.

That was me

BeckyJanI feel it is worse because we (carers) just cannot anticipate what comes next,

yep that's so right


Did I look after my mother out of guilt yes and out of love yes both , but then if you put them in a home does that mean you love them less . (that’s a load of **** ) that made me look, after my mother at home, people say to me oh when your mother passes away your feel good that you done your best ,

What they are saying is that I will not feel guilty afterwards

I say you done the right thing for your mother and yourself . my mother was just like you mother wondering the street all what you say, I stress my life out got her on Ebixa ,to give her a good quality of never ending of life , gave up my job ,trash it left right and centre yes that’s how I feel , what for , so I don’t feel guilty after she dies , sorry I think that’s a load of Rubbish .

Now I just can't do any more , so its my time now

People that are not living in it, make you feel guilty. I don’t believe in guilt feeling anymore why because I learn the hard way .please don’t anyone comment, reply on what I have said . I have a right to feel what I feel ,And then life go on

 

[mel]

Sorry Margarita.....I must reply......Well said

 

[Margarita]

Mel



"The most wasted day is that in which we have not laughed."

You have made me laugh , so my day is not wasted , love your saying

 

[mel]

Hi Margarita
I think you have to have at least one good chuckle a day
love xx

 

[Amy]

Hiya Martin,
I know others have already said it, but welcome to TP.

We all do the best we can, and that's not always keeping the Alz sufferer in their own home, in a potentially hazardous state.
We all have different circumstances and responsibilities in our own lives - spouses, partners, kids, grandkids, jobs, mortgages, debts - you can't just drop everyone & everything else & try to find that magic wand when there isn't one.

True Lynne, but no matter how many times people say it, nor how logically we know it to be true, there's that little niggling voice that says "If you really loved them, you would...." Stupid yes, but it doesn't go away.

Margarita, why did you presume people would contradict you?
Isn't it great, those of you who are caring for a parent at home are as confused as those of us who have been instrumental in a parent moving into a NH!

Love Helen

 

[Tender Face]

At least it meant that the times I spent with him were times where I could focus on doing something 'fun' with him rather than the earlier days of being fraught about whether he'd eaten or washed and whether he was going to go wandering the minute I left.

Hi Martin,

Áine, I think this is SOOO important ... and has certainly touched a nerve with me.

The phrase "quality time" has been resonating with me for a while.... parents with children here of a simlar age to me will no doubt recall the 'fashion' of 10+ years ago when we were comforted about our guilt of returning to work and leaving our children to nursery or other care ... "it's ok as long as they're well taken care of - it's the Quality Time that matters......." (I know this parallel has been drawn before). Don't tell me it didn't break my heart not to be with my son all day long, don't tell me it didn't break my heart that financially I was in no position to give up work .... so here I am again .... similar position .... but this time it's mum who needs the Quality Time ..... (as well as my son, still) and no, I'm neither saint nor Wonderwoman and can't do everything for everyone .... much of MY stress, I am recognising is caused through constantly trying to 'strike a balance' ... and hold on to some semblance of working life, and the income it generates, let alone the taste of 'reality' it can offer ... (and yes, I've fallen off the tightrope a few times recently )

I may come across as being very selfish when I state here that I am trying to persuade mum to have carers come in .... part of it IS selfish - I openly admit I don't know how much longer I sustain the physical efforts - but part of it is that if others (paid 'agencies') were to undertake the practical or 'basic care' aspects of her care .... I might one day get to spend a few hours with her just chatting over a cup of tea or a trip to the garden centre instead of 'multi-tasking' as I have this afternoon.... dusting, playing 'Hunt the whatever it is she has lost now', providing a cooked meal and cleaning the loo type stuff' - neither mum nor me have exactly been 'stimulated' this afternoon .... which is no good for either of us......

And no, to give up work in my personal circumstances would mean I could not then support my own family, especially my son and his future...... and if mum was well enough to understand all that she'd been furious to think I'd even once considered it.....

I know this is a million miles from the NH decision (one I'm acutely conscious of as looming on the horizon at some point for me and admit to being petrified at the thought)...... but I just thought it might be worth illustrating what I saw as a parallel....

Love, Karen (TF), x

 

[Tender Face]

Dear Michael

Sorry, had to 'split' my response on this thread - can't do any more 'multi-tasking' today!

If you don't mind me being so bold, your guilt seems to emanate from worrying about whether your decision will be influenced by your thoughts on what is best for you or for Monique .... The fact that you are even worrying about it tells all!!!!

I so agree about the "rows of Solomons" ... have you mentioned THAT to the GP 'cause from where I see it he is the only one could exercise an objective judgement about what is best for Monique - and should include you, of course... but instead seems to be passing on a requirement for you to make a moral and obviously very subjective judgement which is totally unfair on you ..... and therefore on Monique too.....

Just my thoughts.....

Love, Karen, x

 

[DickG]

Michael

I share your dilemma, do we go along with medication that renders our loved one a virtual zombie (including the shakes) or do we watch their agony of agitation and confusion. I have chosen the medication and the bloody guilt monkey that goes with it - please God I have chosen well.

Dick

 

[mel]

Hi Michael and Dick
After a long talk with the GP I've decided to go with the medication route.....it seems the lesser of 2 evils.......i think?